Botox treatment for CP

 

Days like these are tough.

We’ve gotten used to the RCH visits, but every now and then there’s a big one that knocks us all for six.

Chiara fasting from 7am to get Botox treatment in her hamstrings and adductors and a plaster cast to help treat her relapsed clubfoot.

Drop off Grace to kinder and on route to RCH. After the 200th+ hospital visit I’m wondering why we didn’t move closer in. Mauro and I barter for who will go in the back seat now and on the way home. We usually do 50/50 to keep us both sane.

Chiara tolerated the car-seat for half the drive, the other half was a complete doozy. Patience Natalie, I inhale and exhale. We arrive on time, check ourselves in and wait.

Hours tick by, the waiting room is a complete mad house.

Kids are tired, hungry and losing their patience. One young boy is kicking the walls, hitting his Dad and screaming, another little girl is on the floor in complete melt-down, parents look tired and over it. Then in the corner I see a Dad sitting beside his son’s wheel-chair reading a book. I looked around the room and saw so many medically fragile children with a subsequent fragile parent, friend of extended family member. In these moments I move into prayer, you know those moments where the only action is prayer… everything else is unanswerable, why .. why.. why do these children suffer?

The energy in the hospital was like nothing we’ve experienced. There was so much sorrow, suffering and sadness. At around 3.30pm the waiting room was the last place anyone wanted to be. Try and imagine a room full of children (from as little as a few months old to 16 years old) all fasting, hungry and tired. Some with high needs, others with none but most of them losing their patience. It was expressing through fits of rage, screams, kicking in walls and flustered family members.

Then there’s Chiara, who bursts into tears at a sudden sneeze, cough or fart (yes, this gets pretty funny but for another story! 😉 so she wasn’t coping very well either. Finally we get the call to go in. But the pre-op room was just as crazy as the waiting room!

I saw a little girl holding her Mum’s hand eyes full of fear, as they wheeled her into theatre. A father was crying holding his little boy with leads all over his body, with that look I know so well. I see it in Mauro’s eyes often. Another father was rubbing the forehead of his teenage son who had severe cerebral palsy. A young boy was screaming and refusing to put on the white gown, a little 6 month old baby was getting oxygen and I watched all these parents try to cope. I wondered what fate had install for all these children and their families? I wondered how they adjusted to a different way of parenting?

I had to choke back my tears many times, I saw defeat, fear and despair in so many parents eyes. But I also saw the love, my God the love. Through all the chaos the strength of love was palpable.

Chiara’s eyes looking around the room, her bottom lip dropping. I wonder what she makes of it all?

And then suddenly the pre-op room was silent. We were the lucky last. Chiara was getting drowsy from the pre-med’s so was very floppy and relaxed. The surgeon comes to collect Chiara, he asks which parent is coming into the theatre for the general anaesthetic administration. Last time I did, I held the mask on Grace when she was having minor op and when I saw the life zap out of her in a matter of seconds, I completely freaked out, her eyes were still open, yet she was unconscious. The doctor warned Mauro that it’s not easy on parents, but true to his stead fast loyal nature, he stood by her side to the very last second. And yes, he was just as distressed by the experience of watching Chiara go under.

We wait for the procedure to be over, something that we have become accustomed to. We wait in waiting rooms and while I flick through my phone from time to time, I always marvel at Mauro’s ability to remain completely present the entire time. No reading the paper, no ducking out to the cafe, no checking the phone (not that he had it on him!) no distractions. Mauro if you ever read this, I love you!

Then we get the call “Chiara Mazzeo’s parents”. We find her screaming uncontrollably. Not only that, the boy next to her was making the most harrowing sounds as he was coming to. For a little girl who has a high sensitivity to loud and sudden noises, this must of been terrifying for her to wake to. As well as having a heavy plaster cast on her leg, no parents by her side when she woke and feeling disorientated. Mauro was beside himself, he was so upset he wasn’t there when she woke. It was his one and only request to the staff.

This is the shitty stuff, helplessly holding your daughter while she is unconsolable. And to add another layer, she can’t tell us what is wrong. She relies heavily on us to intuit things for her.

Then a few urgent issues arise when her heart rate suddenly drops, along with her body temperature. Again, I move into prayer. There is nothing else we can do. A few injections later and she’s doing a little better.

The post-op room is intense, ten times worse then the waiting room, and the pre-op room. A little boy is screaming after his eye operation, his Mum holding a soft cloth to cover his eyes as he didn’t want to open them due to the pain.

It’s about 8pm as I walk through the empty corridors to collect the car, the cafe’s and chemists have closed. The only sign of life on the ground floor are the fish swimming through the aquarium.

Then the flood gates open, tears stream down my face, it dawns on me that this massive procedure today is only a temporarily solution to Chiara’s complex picture. That we will not be leaving the hospital with our healed and recovered child, instead as we carry her through the doors she still has a serious brain-injury, she is still unable to move freely, her words may never make it outside of her mind and her time is limited on this earth.

It hit’s me hard in my solar-plexus and the tears flowed and flowed, not just my tears, the tears of all the parents and children I saw today.

It’s hard not to have moments where you feel defeated by this race. And when I hear my husband say the same, I know we are both physically and emotionally exhausted and we need to tread gently for the days to follow.

I exit out of the revolving doors and the first thing that caught my eye was a small cross on top of a building to the right. The sun was fading but with it came some extraordinary colours that swept the sky. Soft pinks and streaks of purple..

I took a big breath in and whispered my prayers, stood up tall and walked to the car.

Now for the long drive home..

Categories: Cerebral Palsy

4 Comments »

  1. Darling Nat – your superb writing from your heart bought tears and more tears. Thanks so much for sharing your journey with so many people. Can’t answer your question of why so many children and their parents suffer. Love Papa.

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